"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": .. an online..intervention: SELF-BREATHE, 2022, Chalder et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE

Abstract
Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore the preferences and choices of patients regarding the content of an online self-guided chronic breathlessness supportive intervention (SELF-BREATHE).

Methods: Semi-structured telephone interviews were conducted with adults living with advanced malignant and nonmalignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis.

Results: 25 patients with advanced disease and chronic breathlessness (COPD n=13, lung cancer n=8, interstitial lung disease n=3, bronchiectasis n=1; 17 male; median (range) age 70 (47-86) years; median (range) Medical Research Council dyspnoea score 3 (2-5)) were interviewed. Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE.

Conclusion: Our findings provide an essential foundation for future digital intervention development (SELF-BREATHE) and scaled research.

https://pubmed.ncbi.nlm.nih.gov/35821758/

 
Pulmonary rehabilitation is effective at slowing the rate of functional decline due to disease progression and breathlessness in patient with chronic respiratory disease [6]. However, uptake of pulmonary rehabilitation is varied, especially in advanced disease where patients find it difficult to leave home [7]. There is a growing interest in mind–body–movement therapies and arts-in-health programmes to support those living with chronic respiratory disease; however, the evidence to date demonstrates inconsistent benefits [8–10].
Click to expand...
Providing a reliable source of education and knowledge not only helps individuals to understand their illness, but can help to challenge negative health beliefs, misconceptions and fears about exercising and breathlessness.
Click to expand...
 
The paper said:
Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE.
Click to expand...
And then everyone clapped, I guess. I'm sorry but there is obviously no way this is what patients actually say and want. Zero chance. This is like how the recent PSP on ME/CFS featured exactly no psychosocial priority, yet every cheap study from Chalder or Crawley somehow always only features those. They are putting their own words into people's mouths and it's not even subtle. This reads exactly like fake customer testimonials written by the company owner straight from marketing. They clearly limited discussion to a small set of topics, which happened to be exactly the ones listed above. The fact that BS like this gets published is making a mockery of medical research. You can have healthcare based on science or pseudoscience but you can't have both, they are mutually exclusive.

Also: that title? Because what was missing from psychosomatic ideology is that it wasn't dripping with condescension enough. It generally hovers around 8-9/10 but this is taking it all the way to 11. I'm not sure it's possible to resist making puppet mouths with their hands while saying it.
 
Really, addressing motivation in patients with advanced lung cancer? For cancer and non-cancer conditions affecting breathing, there is no lack of motivation to breathing easier. There is only researchers who plant ideas into the mind of these patients and questionnaires that are structured just to support the researchers' conclusions.

What next? Motivation to live for the dying?
 
Arnie Pye said:
I must admit, I don't understand the title of the paper. What have the first half (The whole of humanity has lungs, doesn't it?) and the second half (We are not all the same sort of people) got to do with each other.
Click to expand...
There's a reference to poo above - that gives a strong indication of the link.
 
You must log in or register to reply here.
Back
Top Bottom